please remain seated for the rest of your life

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This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’ type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “please remain seated for the rest of your life.” There’s a link to all the vignettes at the end of the post.  

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please remain seated for the rest of your life

I’ve been sitting in this chair for hours. For days. For weeks. For months. Maybe I’ve been sitting in this chair for years; I don’t know. Why does that old lady in the wheelchair keep moaning? Is she sick? Why doesn’t someone help her? Why am I here? It’s so noisy. Beep. Beep. Beep. I want to go home. What is that beep, beep, beep? It makes me nervous, all that beeping in my ear.

I’m tired of sitting in this chair with no one to talk to and nothing to do. People walk by me to and fro. What are they so busy doing? I’m busy too. I have things to do. I have places to go. I’ve got to get out of here. I’m going to stand up. My legs are a bit rubbery, but it feels good to stand. I want to stand. It feels good. Oh dear. What’s that buzzing? And more beeping. Louder beeping. Louder and louder.

“Annie!” A voice scolds me. Suddenly, there’s a hand on my shoulder. It pushes me back into the chair. I sink and sit. My bottom makes a little thump.

“Sit down, Annie! You’re not allowed to stand up,” the voice says. I try to get up again. The hand holds me down where I am. It stays on my shoulder. A face leans into mine. Close.

“You’re not allowed to get up, my love. You’re not allowed. You might fall down and hurt yourself.”

I’m not afraid of hurting myself. I sit in this chair for hours. I cross my legs. I uncross my legs. I pick the polish off my fingernails. People walk by. To and fro. To and fro. They have somewhere to go. I want to go too. Let me go.

More

© Susan Macaulay / MyAlzheimersStory.com 2016

hidden restraints: hidden abuse

don’t fence me in: a true story about the impact of physical restraints on my mom who lived with alzheimer disease

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13 Comments

  1. Pingback: 20 questions to ask yourself about “wandering”

  2. Many of us do not spend time in a nursing home unless we absolutely have to. And that usually means we have a family member who is a resident. Or if you’re like me, you volunteer to go and visit.

    I was at Golden Living Center – Three Oaks in Marshfield, Wisconsin yesterday. I go every week for a few hours. When I read this blog post it hit me how it so accurately captured what I see and hear every time I go there. I am not saying that Three Oaks is any worse than any other nursing home. The point of these articles is that this is too often the normal way things go and the staff are often oblivious to how the residents are truly feeling and what they are experiencing and how they are interpreting their environment.

    For me, reading this short article, I didn’t just picture the narrator or main character that was describing what she was experiencing. Instead, I pictured the real people I see every week at Three Oaks.

    I thought of the quiet gentleman who keeps standing up and setting off the beeping of his chair alarm only to be told to “sit back down” (and just yesterday I heard a staff member use the same line in the story: “we don’t want you to fall and hurt yourself”). I thought of other residents who you can see getting agitated by the loud beeping that goes off every few minutes.

    I also thought of a certain man and a certain woman who every time I go there — no matter what day or what time, and no matter how long I stay there — are always sitting in the exact same place: he in the same recliner, and she in the same chair at one of the dining room tables. One day I tried to sit in the same chair there for as long as I could and just quietly observed. I lasted about 30 minutes before I had the urge to stand up and walk around. I can’t imagine sitting in the same chair all day! Once, after greeting a resident after just coming on to the Alzheimer’s care Unit, she said to me: “I’ve been sitting in this chair for hours. I don’t know what I did, but that lady is mad at me and told me I had to sit here.” It was clear to me that this was her perception and interpretation of her situation, but it was also clear that this was her reality, regardless of whether it was actually the truth or not. It was the truth to her.

    I also thought of the anxious woman who every night after dinner whats to call her daughter to come get her and take her home. Just like the lady in the story she tells me she needs to get home because she has things she needs to do. The strategy of the staff is to tell her “we already called” or “the phone is busy now so you need to wait” — and when that doesn’t work then they just ignore her. I heard one staff member say to another “She does this every night. She’ll get over it eventually and forget about it.”

    And I think, “Am I the only one who sees this all as real, genuine, suffering?” The anxiety of wanting to call a family member to come take you home, the frustration of being ignored, the fear of being punished, the sadness and often the tears that fall when you realize no one is willing to help you; and the restlessness and the need to get up and stretch, and the longing for free movement and independence — these are all too real to these residents. This is not something to be ignored.

    People with dementia perceive their environment, their relationships, and themselves in very real ways that are often different from our reality as caregivers, staff, family members and friends. We need to put ourselves in their shoes — or perhaps in their chairs — and change our perspective and the way we provide care.

    • “I’ve been sitting in this chair for hours. I don’t know what I did, but that lady is mad at me and told me I had to sit here.”

      I know those words, Doug, and I wept as I read your comment. I see the people whose stories you tell as clearly as I see the full moon outside my window.

      This series based on the NHBPS is ongoing; today’s vignette is entitled “what a shame,” is here.

      I’ll be in touch.

    • PLEASE READ… I work in a memory care center and the hardest thing to do is to deny someone the telephone. If you were in my community, the part you might not see is:

      A. We’ve validated a residents need to call a loved one with kindness, and genuine love for them several times daily for many months (and will continue to do so) but have to move on to plan B because it helps for 5 minutes and they return with the same question…”Can I call my ‘brother’? I haven’t heard from him in years?” This is so very sad. After meals it becomes very difficult for us to continue to spend 5-10 minutes validating each resident that wants to make a phone call and you would really be surprised at how many of them become obsessed with phone calls. You would also be surprised at how many family members have requested only one phone call per day be allowed. They initially allow at will calls and then it becomes so frequent it interferes with their employment. Please know too…after mealtime all staff is busy toileting residents. Everyone has to go after a meal. That’s just how our systems want to work 😉

      B. The person they are asking for has passed away. This is a challenge. I would love to hear advice from someone on dealing with this. It hurts my heart. Imagine having a sweet resident ask you to speak to their child that passed 15 years ago… 25 times every single day. We have to be creative.

      C. Dementia patients are all different depending on their stage. I have some that are very involved in activities and the ones that aren’t we cannot get involved we will ask again in ten or so minutes. We also have two full time activity directors and activities for different functional stages of the disease process. Despite this, some just refuse to participate. They often have their “spot”. They will run you off with a stick if you sit in it. The understanding of how time is passing and how to communicate feelings, etc. is part of this disease process. Many residents will say to their friends, “I haven’t seen you in a year.” But they only went to the bathroom. One lady tells me sometimes, “I just want to die”. This is alerting and we are. Mandated reporter of suicide threats but wait… I validate her by starting with a polarizing statement. I say, “ What could be so bad that you want to die??” She tells me she hasn’t seen her son in while and she misses him. I call him and he visits. Things are better and she is smiling. She couldn’t communicate properly that she was lonely. If you heard her say, “I just want to die.” and didn’t get to hear my conversation with her, you could assume so much. This particular resident and I have this conversation on about a quarterly basis. Bless her.

      D. When you do hear one of us actually tell someone to sit down it is for their safety. This is a BIG deal. We absolutely LOATHE doing this. There are some residents that have suddenly began to shuffle their feet. They refuse to use a walker. They also do not realize they cannot walk without falling. They fall EVERY time they walk. State laws do not allow us to actually use a true restraint. We don’t want to drug the person to the point of being a zombie. What do we do? We could let your loved one wander around and fall. They would get a brain bleed and another and the Physician most likely would do nothing due to age and disease process and they would become terminally agitated, go on hospice and pass away. I have lived this.

      It is very easy to look around and see these things and think we treat our residents absolutely awful. I understand how someone from the outside looking in would not understand. I do this job because of my love for these residents. I can tell you the life story of every single one of them. I can tell you how to calm them. We are their family too. I miss them when I am on vacation. I worry about them on weekends. I worry about their families. I also worry we have staff that doesn’t have a heart for this job. We work overtime training them…classroom style. Please, Please know… We are doing our best. This isn’t for a paycheck. There are sooooo many more things I could do for a paycheck and a nice fatter one at that. Please know, we care.

      • M. Susan Macaulay on

        Thanks for your comment Krista, and for the good work you do with the people in your care.

        You are right, it’s a very difficult job being a care worker in a long-term care facility, particularly when the residents are living with dementia. You are also right that some people are not cut out for the job. They don’t have a calling to do it as you seem to. As a result, people don’t get the proper care they deserve – I’m sure you’ve seen not too.

        My mother was in a dementia care unit in a nursing home where I visited her for several hours each day for four years. I saw and heard a lot. Some good, most not so much. All of the vignettes in this series are based on my personal experience with my mother, or on situations I observed with others. None of the scenarios is exaggerated in any way. This was my real lived experience. Just as your lived experience is yours, and different from mine.

        I would suggest that if somebody suddenly starts shuffling, it may be an indication that their meds have been increased because this is one of the common side effects of antipsychotic medications. What happened with my mother’s that she had been very active up and to the point of being relocated into a nursing home, at which point they wanted her to sit down and not move. Of course that didn’t suit her, and when she got up and walked around they said she was “wandering,” Which was problematic for them. She had never fallen. But then they increased the dosage of antipsychotics, and lo and behold, all of a sudden she started to fall as a result. Then they said “she’s falling all the time, so she needs to sit down for her own safety.” And then they increased the meds again to make sure that she sat down. The more she sat down, and the more men she got, the less she was able to walk until finally she was confined to a wheelchair, which believe me, never would’ve happened had she not been medicated. This was the result:

        http://myalzheimersstory.com/2018/03/18/alzheimer-didnt-do-this-drugs-and-dementiajail-did/

        Essentially, over a period of four years I watched my mother slowly being tortured to death in a long-term “care” facility. Were there some kind CNAs? Of course there were. Were they doing the best they could? Yes. but they were poorly trained, there weren’t enough of them, they didn’t have enough time, the place was constantly short staffed because people didn’t come into work – who would want to when the conditions were so abysmal? The whole thing was a nightmare.

        It sounds like the place you work in his relatively good compared to many. I note that you have activity directors for example, and activities! What a concept.

        With respect to dealing with repetitious questions, phone calls, and the like, one must be as you have noted creative. And being creative takes a lot of energy, which I’m sure is hard to call up with the amount of work you have to do. Plus, as you say, each individual is at a different stage, and each individual is also different and unique. That means solutions have to be individual based on the persons needs and desires.

        My intention is not to blame care workers, many of whom work extremely hard. But I do blame the system overall, because the system is broken and it needs fixing. To get it fixed, we need to first understand what the problems and issues are. I talk about some of those here, where my views are more fully explained:

        http://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

        Thanks again for your comment Krista, and for all you do for the people you care about.

        P.S. by the way, please remain seated is based on these real-life situations with my mom:

        http://myalzheimersstory.com/2017/12/27/dont-fence-me-in-a-true-story-about-the-impact-of-physical-restraints-on-my-mom-who-lived-with-alzheimer-disease/

        http://myalzheimersstory.com/2018/01/23/hidden-restraints-hidden-abuse/

  3. Bravo Susan. Clearly there is a need for an advocate to bring change to the system you are dealing with. My mother was in a care facility in Vancouver for two years and although the care at times needed better funding I am appalled at what you are witnessing first hand. Can the care vary so much in the east as that in the west?
    Scottish Rona (ex Dubai).

    • Rona, thanks so much. Your comments always mean a great deal.

      These vignettes are based on conversations I’ve had with care partners around the world including Australia, United Kingdom, United States and Canada. My creative non-fiction fictional stories are informed by the stories, comments and experiences of members of my worldwide network as well as observations I’ve made as part of my own personal experience over the last decade.

      Just this afternoon I spent an hour on Skype with an occupational therapist who works for the NHS in UK and who daily fights an uphill battle to see that people with dementia under her care are treated with the respect they deserve. I am in regular contact with Australian colleagues who are as passionate as I am about creating change. I liaise with other across Canada and the US.

      There is a growing tide of change spearheaded by the likes of Teepa Snow, Dr. Allen Power, Naomi Feil, Dr. Bill Thomas of ChangingAging, and others.

      But there is SO MUCH work to be done. We have to change the whole western paradigm of what it means to age and die.

      Unlike many economically blessed nations, Canada does not have a dementia care strategy, and it has one of the highest rates of drug consumption in the world. Elders in the province of Quebec are prescribed antipsychotic medications at rates four times as high that of other provinces: 1.3 prescriptions of antipsychotics per person. The rate of psychosis in the general population (for which these medications are intended) is about two per cent. I would characterize the way elder people with dementia are sedated with antipsychotic medication in Quebec as abuse.

      If you plan on getting old, better start advocating with me now 🙂

  4. divakaren2013 on

    Wonderful article Susan! If only more people were able to think how it must feel …from a person living with dementia’s point of view.

    Just love Teepa Snow, her videos and the amazing way she gets people to think!

    Downsizing Diva and Metroland Media are hosting a Caregiver Show on Friday, May 6th at the Ontario Science Centre in Toronto. Admission is FREE and our goal is to have lots of family caregivers join us and discover the many community resources and support available to help them on their caregiving journey!

  5. I do see this. So I make changes happen as the Well being and Activities Coordinator where I am. I ask for people to be assisted to activities should they want to walk, obviously i know who enjoys what. I see facial expressions and know who I need to be spending extra time with over the hours I work. People walk with a purpose and do not wander. I seethe if I hear this, and speak up for the person. If Annie was in my home I would speak to Annie and ask if she wanted some support to walk somewhere. If Annie was unable to walk then I would most definitely not pass bye without saying hello at least. But Annie would definitely be left with items that she might like to engage with. I have a rule never walk past a communal area without saying hello. I might be busy but whats ten minute when it breaks the silence and engages someone throughout there day.

    • Good for you Anon! Keep up the good work. Hopefully others will see and follow your example. We need more like you in the care system. Thanks for sharing your experience and I appreciate your comments and observations <3

    • Well, I don’t know for sure because I don’t have Alzheimer’s yet. But I’m fairly intuitive, and I’m an amazing observer, and I think I’ve gotten it pretty close.

      I hope it can help you and your mom in some way <3

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